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How long is this ADAP waiting list? I mean how long it will take to start to be covered by ADAP after one applied for it, on the average? Is there a national average or state wide average?

Some states have no waiting list and they could cover you immediately. The states that have a waiting list means you must wait for someone to come off of ADAP for someone on the waiting list to be covered. If you get behind 500 people you have to wait for those 500 people to become covered before you can get coverage. The problem is the wait list only moves if someone goes off medication, dies, or gets coverage in some other way.

and this list doesn't even take into account those people who are being "kicked off" because of changes in the some state's eligibility requirements (i.e. income limits) or the cuts being made in the number of formulary drugs available.

But out of it all This is the msot horrific...Ohio to disenroll 861 clients due to new medical criteria. I believe this new medical criteria is that you have to have a CD4 less than some set amount to be eligible, havent heard the exact info on that yet.

Ohio: disenroll approximately 861 clients based on new medical criteria

and this list doesn't even take into account those people who are being "kicked off" because of changes in the some state's eligibility requirements (i.e. income limits) or the cuts being made in the number of formulary drugs available.

the "saving grace" to that has been that the drug companies have pitched into the problem and offered discounts and reduced co-pays, so many people are still able to get their meds.

However, when you're border-line to poverty (and that's why many people are being dropped with the ADAP eligibilty requirement, although they might be making only $1-$100 over the new limits), it's still a huge financial hardship to pony up a couple hundred "extra" dollars for your meds that you didn't have in your budget previously. Where do you make the cuts? in your food? your utilities?

I remember many times I've lived without cable, without a phone, and without a car just to keep food in the cupboards and the gas heat on during the Winter months up in Ohio. (Ever time I heard the news report of some senior citizen freezing to death in the poor apartment during the Winter cold, I've always thought "there, but for the grace of god, go I") Thank goodness being on disability enables my med cost to be covered by medicare/medicaid or I would have been like others and had to choose between life-saving meds or life-sustaining food. It's why I'm "forced" to stay poor too. God knows, I can't afford to accidentally earn that $1 extra and get dropped from my med coverage.

Ohio: disenroll approximately 861 clients based on new medical criteria

Egads! That hurts to hear that. I haven't been away quite a year yet (after spending 25 yrs there), so Ohio still holds a big place in my heart and mind. I thought moving here to SC, with one of the highest (and growing!) rates of HIV, was pretty bad, (and one of the reasons why I've taken such an interest in the state ADAP funding issues along with the testing/prevention programs of my ASO); but it sounds like I would have been just as motivated to become pro-active about these issues if I had stayed up North too.

Couldn't some kind of prioritizing be done here, if there is really a shortage of money, to see that the money goes where it is most needed? I don't like the "all-or-nothing" atmosphere behind things like the new medical criteria mentioned by WillyWump--either you're on ADAP or you're not; either you get everything or you fend for yourself. Surely we could all do without some luxuries but be assured that we shall have our necessities, when we need them?

For example, the only thing I've used my ADAP for, these four and a half years, has been labs and a follow-up doctor visit every three months. Suppose I got them done every four months instead? How much does one set of blood tests cost, with lab analysis? Three times a year instead of four times a year wouldn't make an enormous difference to me, and it might save a bit of money that could go to other people instead.

Then, as someone else asked recently in another thread, is it really necessary to sit down with the doctor after every new set of labs? I personally love having those visits because there is always some little issue to discuss, but this is hardly a priority compared to someone whose needs are actually urgent. How much money would be saved by simply emailing the test results to most people most of the time, and saving the face-to-face for times when there's a vital issue to be discussed?

In general I would think the priority should be people who have just been diagnosed, people who have just started meds or changed their meds, and people who have some serious medical problem at the moment. Surely the rest of us could use a bit less attention?

Then, to have this going at the same time that people with higher cd4 counts are being urged to start expensive ARVs doesn't make much sense to me. I, with 600 t-cells, could be on atripla now if I wanted, and others with similar numbers are actually being urged to start, while maybe on those waiting lists there are people with 200 t-cells? How does that make sense? Even if it were ideal for people with 600 t-cells to be on HAART, surely if there is a money crisis going those meds should first go to people for whom they are urgent? Emergency room visits do not operate on a basis of first-come first-served. Why should this?

Granny60

In a meeting with our case manager 2 weeks ago, we were told that the programs in Missouri are becoming increasingly strained due to people moving to Missouri from states with waiting lists. She was going to a meeting a couple days later to find out about the cuts they were going to make to handle the increase volume of clients. I guess at the September meeting she will tell us what cuts have been made. She is going to be absent at the meeting in 2 weeks because she has to go for "training" on the changes that are being made. So far it has been a $500.00 reduction in dental benefits and a decreased formulary list of meds that are covered. I truly feel for those people on waiting lists. The boat continues to slowly sink. The question is will it crash on the rocks?

Couldn't some kind of prioritizing be done here, if there is really a shortage of money, to see that the money goes where it is most needed? I don't like the "all-or-nothing" atmosphere behind things like the new medical criteria mentioned by WillyWump--either you're on ADAP or you're not; either you get everything or you fend for yourself. Surely we could all do without some luxuries but be assured that we shall have our necessities, when we need them?

Nestor, I believe you are confusing ADAP and Ryan White services, because ADAP pays for DRUGS ONLY, no tests, treatments, doctors, etc.. Ryan White, is the program, often called the "payer of last resort", because that program is used to cover people, who have no other coverage available, either publicly or privately. Your situation sounds like mine was, when I lived in Florida. I had Medicare + Part D, but I could never afford the copays on the drugs. I was able to use ADAP to get most of my drugs and Ryan White would help with my drug copays.

When a person is deemed ineligible for ADAP, they are still eligible for Ryan White services, assuming the money is there. My entire problem with the ADAP programs, is the amount of waste that exists and nobody seems to care about addressing that problem. When I lived in Michigan, their HIV services and administration were stellar. One office to apply for all HIV services and once approved, a medical card was issued and accepted almost everywhere. I got my drugs from the local chain drug store, a block from my house. I always thought that this system must be very expensive, yet I cannot help notice that Michigan has no waiting lists at all.

Contrast that to Florida, with the most inhumane, inefficient HIV services system, ever devised by committee. You want to know why Florida has a waiting list? Here's one reason. Countless times I have waited for my drugs, standing behind someone, who has not refilled their drugs for 4 months. They bitch about the time they have to wait, but when they get to the counter, the pharmacy gives them their drugs? WTF? The person has not taken HIV meds for months, yet you think nothing of handing them a bag with thousands of dollars of drugs, without any need for consultation regarding drug adherence? You might as well take a percent of all the drugs and just throw them away directly and save the administrative cost of dispensing them to people who will not use them.

I have bitched myself hoarse with Florida officials, but nobody can do anything, nor do very many seem to care. Like all things, until you remove the political and religious ramifications of HIV, we will never get the care that we need. I will forever be ashamed, of that part of America, who would deny life saving treatments for HIV positive people. A 14 trillion dollar economy, that spends over 800 billion, each year, waging war, cannot find a few hundred million dollars to save so many lives... directly. What a shame.

Nestor, I believe you are confusing ADAP and Ryan White services, because ADAP pays for DRUGS ONLY, no tests, treatments, doctors, etc..

Actually, when I was new to this forum, another member sent me a private message saying the same thing you say above; we then looked into the matter and it turns out that in New York, where I live, ADAP does indeed pay for doctors, tests, and everything. His state was different, hence the misunderstanding.

Quote

A 14 trillion dollar economy, that spends over 800 billion, each year, waging war, cannot find a few hundred million dollars to save so many lives... directly. What a shame.

This shameful point was made dramatically by a poster which I saw on a bus stop in Washington D.C., where I recently spent a couple of days. It showed a balance, one scale containing the word "AIDS" and the other a map of Afghanistan. The latter side was weighed down to the ground, the former dangling in the air. Beneath the map of Afghanistan was the stratospheric number of dollars spent fighting there; beneath the word "AIDS" the number of people who have died of that disease. And at the bottom, something to the effect of "Mr. President, the war on AIDS has still not been won. Please rethink your priorities." or some such message.

But out of it all This is the msot horrific...Ohio to disenroll 861 clients due to new medical criteria. I believe this new medical criteria is that you have to have a CD4 less than some set amount to be eligible, havent heard the exact info on that yet.

OHDAP is dropping everyone with a CD4 count above 500, except those who have been diagnosed with AIDS. It's not clear whether those who 'make the cut' will be dropped in the future if their count goes above 500.

For example, the only thing I've used my ADAP for, these four and a half years, has been labs and a follow-up doctor visit every three months. Suppose I got them done every four months instead? Three times a year instead of four times a year wouldn't make an enormous difference to me, and it might save a bit of money that could go to other people instead.

This is an interesting idea, and it would certainly help ease the burden on ADAP.

However, Hold on while I drag the dead horse into the room so I can beat it again....

The states need federal intervention into the crisis and they need it yesterday. The bottom line is The states have no money to address ADAP, and as a national health crisis the feds have a duty to step in and help out. Until Obama and Congress decide to step in nothing much will be done. NASTAD, Napwa, The Ohio AIDS Coalition, among many others have been calling on the federal govt to act, but have gotten very little response.

Actually, when I was new to this forum, another member sent me a private message saying the same thing you say above; we then looked into the matter and it turns out that in New York, where I live, ADAP does indeed pay for doctors, tests, and everything. His state was different, hence the misunderstanding.

Thanks for the clarification and I am curious as to how New York can structure its ADAP to include, what are generally considered Ryan White services in other states? I notice they are not on the list, so maybe DC should be talking to the states that are still providing full services, to learn a few tricks. I also don't buy this notion that the poor states are so broke, because Michigan has been devastated by job losses, yet they seem to have the money. Hell, NYC got bombed, yet New York is meeting its obligation. The real question is why so many states and the federal government, are so unwilling to solve this crisis.

Nestor, I think it's all in how New York labels their program as well as other states, but I think in the Ryan White Care Act there are different "parts" (i.e. Part A of the program pays grants for different things than Part B). In New York state the brand these components as ADAP, ADAP Plus and ADAP Plus Insurance Continuation Program (APIC) but that doesn't mean it comes all from the part of Ryan White that does actual medications, if that makes sense.

For example ADAP in Pennsylvania isn't even called ADAP, it's called SPBP (Special Pharmaceutical Benefit Program) and your average HIV patient would get confused if you called it ADAP, though it's the same thing.

At any rate while I share in your concept/belief that a triage of some sorts would be useful, I doubt it's practical as long as these different programs come from different grant sections of the overal original Ryan White Care Act.

I hear what you're saying Joe; my state (AL) wastes TONS of ADAP money, handing out 'unnecessary' drugs. Then, when a change is made to your current Rx's, they may or may not put it into their "system", so even if your doctor tells you to stop taking something, you may continue to get it from ADAP for months and months. WTF? When I am handed something I do not take or do not need, I turn it in immediately to our clinic pharmacist (where the ADAP meds are distributed) and ask them to put it in "compassionate use".

I noticed a few times last year, I would have a change in my meds. ADAP would handle the change, but also refill ALL of my meds at the same time. Yes, it helped me stockpile a little of my combo, but what a waste! In effect, I got double meds for 2 or 3 months. Insane !

Logged

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

A few more states will soon be establishing their own waiting lists soon, while others are implementing other "cost cutting measures" not only raising eligibility requirements, but also covering fewer meds (reduced formulary), capping enrollment (like no longer adding to the wait list somehow solves the problem. sheesh), eliminating services in some jails, no longer reimbursing for lab work, instituting co-pays, setting monthly/annual expenditure caps, and, the most extreme cost-cutting measure, disenrolling (is that even a word?!?) current clients (Boo! Hiss! to OH and SC)

Under AHF Proposal, Drug Companies—All of Which Have Patient Drug Assistance Programs—Would Provide Free Lifesaving HIV Drugs to Patients on Florida’s AIDS Drug Assistance Program (ADAP) Waiting List While AHF and Other Participating Pharmacies Would Absorb Cost of Dispensing the Drugs

1,361 People—More than One-third of the 3,337 People Currently on ADAP Waiting Lists Nationwide—are in Florida, Which also Has the Third Highest HIV Population in the Nation-----------------------------------------------------As the State of Florida grapples with a budget shortfall that is crippling its AIDS Drug Assistance Program (ADAP) and forcing the state to place more than 1,300 low-income Floridians on waiting lists to access lifesaving AIDS medications, AIDS Healthcare Foundation (AHF) has proposed an innovative solution to state health officials and seven leading AIDS drug companies that would create a public/private partnership to resolve the drug crisis and get vulnerable Florida AIDS patients on to lifesaving antiretroviral treatment.

Under AHF’s proposal, the AIDS drug companies—all of which already have some form of patient assistance programs for low-income patients in need of medications—would provide free drugs to Florida patients on waiting lists, and AHF, along with other participating pharmacies, would absorb the cost of dispensing the drugs by waiving dispensing fees and other applicable service fees. AHF, which currently serves more than 15,000 Floridians living with HIV/AIDS through a variety of programs including eight AHF Pharmacies located throughout the state, has proposed this program to Florida health officials because the state currently has the largest ADAP waiting list as well as the third highest HIV population in the country. As the largest AIDS medical provider in Florida, AHF also has the expertise and available resources to immediately implement such a program statewide.

Perhaps I'm still a bit woosy, but I'm reading that this proposal would mean that Pharma " Would Provide Free Lifesaving HIV Drugs" to all Floriidians on the waiting lists, but later it says that "Under our plan, all of this would be provided at no cost to [each respective drug company].” Then they mention something about utilizing the unused donated drugs that are given to Pharma.

So...are they saying that this proposal would cost Pharma nothing and that Pharma currently has a stockpile of "unused, donated" drugs? and are they saying that this stockpile is enough to clear the florida waiting list?

This just doesnt sound right. I wasnt aware that such a large amount of unused drugs have been donated back to Pharma, and if so what have they been doing with it up to now?

you're gonna have to blame HIV brain fog or the woosies on this one, because nothing is free, and there are no "unused, donated" meds

"Under AHF’s proposal, the AIDS drug companies ... would provide free drugs to Florida patients on waiting lists, and AHF, along with other participating pharmacies, would absorb the cost of dispensing the drugs by waiving dispensing fees and other applicable service fees."

the way I read it was that AHF is proposing since a 1/3 of the total US waiting list clients are people living in Florida, that the drug companies (who are already giving out rebates etc) to help out with the situation would just donate the meds for free (so this plan would actually cost the drug companies the price of the meds donated) ; while pharmacies would distribute the meds (it would cost them the labor for the running the pharmacy); and AHF would help cover the costs at the pharmacies and the paperwork (state and ASO handling of paperwork to verify the wait list clients)

All-in-all it's a pretty audacious plan. AHF is saying that the wait list problem is so great that a sizable portion of the problem could be solved by dealing with the problem in Florida. AHF suggests that the drug companies should just give their product away for free and that pharamacies should just distribute the meds for free.

This is bullshit. The meds cost what? Literally pennies on the dollar to make and they jack up the price so that they can make an insane profit. Now they're going to reap goodwill from donating the meds we need "Charitably" to people who are desperate for the drugs. They created the issue and crisis and now they're providing the solution, it's absolutely disgusting to me.

I live in MA & we call it HDAP, HIV Drug Assistance Program. We must have some other program for people with other diseases, like cancer, that need drug assistance. Miss Philicia is Right. The reason MA, NY & NJ haven't had a waiting list is because we pay higher taxes here to provide needy people with benefits like ADAP. The Republicans in FL, the Carolinas & many other states refuse to raise taxes to provide the poor & the ill with a decent life. Apparently, they don't care if some poor people freeze to death because they can't afford both heat and food at the same time. Just so long as they can hold there head high and go to church/synaagogue on the holidays & act better than us.

Just so long as they can hold there head high and go to church/synaagogue on the holidays & act better than us.

actually here in SC, they almost thought it was better to finance golf tournaments and beauty pageants rather than fund HIV prevention programs, ADAP, pre-school inoculations, restaurant inspections, and nursing home inspections. (SC ADAP Funding Cut Protest Rally ) Sadly because the SC legislature decided it could actually fund some health care for it's citizens but still chose to continue with the $10 golf tourney loan and the pageant funding, there weren't enough funds to adequately handle the ADAP need and we still ended up with a waiting list.

Florida has no state income tax. Maybe some oh-so-smart person will figure out that's why there's this problem down there.

As a 12 year Floridian who came from PA (a state with a state income tax), I have often said that Florida would not lag so far behind in education, health care, other human services if there was even a small state income tax. It is one of the richest states in the nation. They have a "rainy day" reserve fund that is out of this world - but which they refuse to touch. But, no politician down here - Democrat or Republican - will touch the issue.

Til then, we mainly rely on tourist revenue from sales taxes --- Mickey, Minnie and Shamu keep the state afloat (Orlando and South Beach/Miami basically support the rest of the state).

So, please encourage your friends, family, co-workers, health care providers to vacation in The Sunshine State - stay a few days at Disney, venture down to South Beach and party throughout the night --- the life you save may be mine

looking at the states with a waiting list, sorted by infection rate,you can see that the Southern states have in common for the most part:large waiting lists, high infection rates, and high poverty rates

Mr Marco is correct. While I was busy working the health fair booth my ASO set up at several community events recently (passing out those condoms, hopefully keeping a few more people from joining our ranks - or these waiting lists!), the new ADAP numbers have come out.

Hawaii and S. Dakota both reduced the number of people on their lists this time around (WooHoo!)however sadly both Florida and Georgia added more and more onto their lists

ADAPs with Waiting Lists(3,558 individuals in 11 states, as of September 2, 2010)(changes from August 26, 2010 noted in parens (+221)

I've only been to that hellhole once in my life (excluding layovers) and it was one, if not the worst, travel experiences of my life. Then again I was about 5 years old so I only remember being so ill that I had to be taken to an emergency room and given injection in my ass cheeks. Then I got well enough that I could at least go to Six Flags, and cried when they said I was too short for most of the rides.

And damn if that vile state wasn't like a hot oven with a wet rag stuffed down my throat.

and another reason to have AMG in Orlando - the tourist dollars, the oranges, the orange juice, the alcoholic drinks with orange juice mix; the hotel taxes; the airport tax; all the other sales taxes - have fun and help us Floridians out ----Oh, and did I sayTry Florida Oranges??The above was a SHAMELESS COMMERCIAL MESSAGE.

Nothing like going to a state with 1200 miles of shoreline and not being near a beach in Orlando. Though considering the lipofied bodies on display at an AMG that's not a bad thing I guess.

Plenty of hotel swimming pools, wet-n-wild, oceania, sea world, dowtown disney, city walk, parliamont house, southern nights.... and so on and so onOh, and did I say.... lots ofORANGE JUICE and ORANGESThe above line was another SHAMELESS COMMERCIAL MESSAGE.

Plenty of hotel swimming pools, wet-n-wild, oceania, sea world, dowtown disney, city walk, parliamont house, southern nights.... and so on and so onOh, and did I say.... lots ofORANGE JUICE and ORANGESThe above line was another SHAMELESS COMMERCIAL MESSAGE.

I refuse to go to any Sea World after seeing The Cove last week. Also, I don't drink orange juice to the high acidity and how it turns my stomach with my HIV meds.

Orlando just seems horribly pedestrian and likely full of overly rotund tourists. I see enough of those around Independence Hall every week. At least in Miami I can zip up to Bal Harbour and hang out with the recently face-lifted ladies at Carpaccios.

I refuse to go to any Sea World after seeing The Cove last week. Also, I don't drink orange juice to the high acidity and how it turns my stomach with my HIV meds.

Orlando just seems horribly pedestrian and likely full of overly rotund tourists. I see enough of those around Independence Hall every week. At least in Miami I can zip up to Bal Harbour and hang out with the recently face-lifted ladies at Carpaccios.

Ahhh Carpaccios, now they have good eggplant parmesan! The crab bisque is better than sex.

I bought / shipped tropical foilage in the Orlando area every two weeks in the 80's , stayed there because that's were the party was and best of all I didn't have to drink and drive my 30 foot truck . I had some fun times there but then again whore houses are fun when your young .